My name is Matt Sinclair and I was diagnosed with Chronic Myeloid Leukaemia on 19th October 2005 at the age of 27.
I have written this diary to keep my family and friends informed how things are going with me in Scotland.

Wednesday, September 26, 2007

Photos (Dawsie's Bucks Weekend) : Malcolm, Dawsie (Borat) and Me; Drew; Me and Dawsie; Passed Out with the Horses; A few of The Boys dressed as 70's Pimps...

Still no news as yet...

I didn't realise how tiring it can be when you're anxiously waiting on something you find important! Kas is doing really well, still keeping active, no yelling at me (just yet...) and generally keeping positive about everything. There is only the odd occasion that I see it all building up inside her and she releases very calmly and gets back to the job at hand. That's my girl!

The official due date is this Friday and they say it can happen anytime now. Hard to believe that my next blog post will be of the new arrival. I'm hoping that I don't become the baby bore, so I'll stop with the baby chat now...at least until it arrives anyway...

I've also got the eagerly anticipated PCR test due this week as well. It's all happening. As you can imagine, my fingers are still crossed in the hope I can continue the downward trend and have a result that drops below the 1% mark for the first time ever. This next blog post will be a busy one indeed!

Then if that wasn't enough on my plate, I've just come back from my mate Dawsies' Bucks Weekend to the Lake District in sunny England. Such a good time had by all the 20 blokes who all dressed up at "70's Pimps"! After confirming with the House we were staying at that their definitely is mobile phone coverage, we set off from the bonny lands and off to England to live the weekend that I organised months before. When I arrived, I was very thankful to see that I did indeed have the promised mobile coverage - I was on call for baby duty! As most people are aware, 'what goes on tour, stays on tour' is the Bucks Weekend motto so I won't be sharing any stories....only that Dawsie was fast asleep by midnight and we literally had horses from the surrounded paddocks munching bread from his Borat swimsuit that he was only permitted to wear...

The big day is this weekend - Jason (Dawsie) and Jen's wedding at Solsgirth House, Scotland. It's a beautiful, old, family owned place and somewhere I cannot wait to visit tomorrow night when I head up there for the rehearsal. Again, I am on call for baby duty if the wee one hasn't arrived by then. Hopefully I will at least be able to get through my speech and give the oldies in the room a few horror stories from when he was a young fella growing up with me. Kas is hoping to get up to the House to at least see the ceremony - she hates missing out on anything!

It's just been great to be able to see my good mates Drew & Alana while they're over here for the wedding - nothing like catching up with your old friends! It's been good to see them again and getting on with things as though we only saw them yesterday. My other mate Damo from Australia is also over here as well...to get a piece of Oz when you're living in another country is priceless and something I definetly don't take for granted. I've always been one to make the most out of every day and every situation. Let's just hope the Wallabies keep up their good form in the Rugby World Cup!

The next update won't be far away - what goes on between now and then will be some of the biggest weeks of my life! To be kept update on this blog without having to keep check up from time to time, just add your email address on the right of the screen in the 'Email Subsriptions' section. Easy...very nice!

Thanks again for all the emails of support and best wishes - to see visitors from all around the world checking out this blog is gold. G'day to those checking out my site from Australia, USA (incl Alaska), UK, Ireland, Taiwan, France, Spain, Saudi Arabia, Greece, Czech Republic, Bosnia, Chile, Canada, New Zealand, Malaysia, The Netherlands, Indonesia, Italy, Switzerland, Portugal, China, Brazil, Turkey, Germany, Israel, Egypt, Austria, Singapore, Tunisia, Hungary, Belgium, Korea, Finland, South Africa, Japan, Kuwait, India, Denmark, Bulgaria, Serbia & Montenegro, Guatemala, Hong Kong, Pakistan, Jordan and the Faukland Islands...

Tuesday, September 04, 2007

Photos: Kas nearly due; Start of the climb up Ben Ime; Up the Steep Part Through the Fog; Huddled at 3,100 feet; Back down the sun comes out; Gav soaked; Waterfall after the Rain; Back at the Bus...

It took a few encouraging words from the doctor for me to realise that I had a good result in my hands. In my head, I had somehow convinced myself that if I felt good it would mean my PCR had dropped down quite low and that I had erased even more CML cells from my system. I’m obviously aiming for total eradication. After ten full months of a consistent 2.5% result, worries from the docs and a few fears of my own thrown in, it is great to see it now heading in the right direction…

My first PCR after starting Dasatinib in June this year was officially recorded at 1.6%. The latest one received from my consultant last week was 1.2%...six weeks after the 1.6% came through. It shows a few things, positive and negative, depends on how you look at it – I’m heading in the right direction but quite slowly and the other is that it has more than halved since being stuck at 2.5%. If it continues to drop slowly over the next few months, then I may finally achieve an acceptable and very stable result. I guess there is so much emphasis placed on these tests because of the Drug Company’s 5 and 6 year long term survival data. They say that if you can achieve a 3 Log reduction (100% at diagnosis to 10% = 1 Log Reduction; 100% to 1% = 2 Log Reduction; 100% to 0.1% = 3 Log Reduction) you will have a much higher rate of survival than those who fail to achieve this goal. It’s sad to think that even 5 years ago, most patients would only have 4 or 5 years to live if they never had a fully matched bone marrow transplant. CML has certainly come a hell of a long way since those days of harsh treatment and chemo – the majority of CMLers can now lead a relatively normal life. I say ‘normal’ but who really knows what this means?

So the goal is to obviously reach the goal of a 3 Log Reduction. I’m trying to think of a relevant metaphor to place more emphasis on it but I think you get the picture on the importance for me…

Now back to the ‘normal’ life chat. It’s great to see that Gav has continued to inspire the team and send us up more mountains to conquer. The latest one had me acting surprisingly negative! We decided to take on Ben Ime in the Scottish West Highlands last weekend, a day that started out pretty wet, too wet for an Aussie I thought! As we neared the Munroe, the rain had increased in intensity and completely blocked our view of the surrounding Loch Lomond and scenery. It wasn’t much better when we arrived there either…it took us at least an hour just to make it up a few hundred metres, over a fast-flowing river and a few pit-stops to sort out our saturated gear. I was ready to throw in the towel then but thought I was just being a precious Aussie, afraid of the wet weather. After a few hours of trudging through the water-logged ground and up a pretty steep rocky and slippery embankment, it was then that the dense fog decided to join in the fun. Finally we reached the peak where we huddled in tight, munched our soggy sandwiches and took the picture of us looking thoroughly pissed off. Then it was the descent. The dense fog had by then become so thick I could hardly see my feet, the wind had also picked up so much I thought I was walking in the eye of a tornado and then I saw something that defies all laws of physics – hail stones were blowing up the side of the hill! Thinking of the BBC news reporter that morning talking about teenagers that were lost in the Cairngorms, I turned back to be met by a huge blanket of whiteness and not a person in sight. My thoughts then turned to calling a rescue chopper to get us off the mountain. Eventually we all met up again, yelled a few random words of abuse at the hill and then slipped and fell our way back down to the mid-point of the Munroe, where we then saw the fog and mist being completely blown away. The views were pretty spectacular but I was far more focused on getting my cold arse back into a heated car and back home for a hot shower. We all made it back thank god, peeled off our drenched walking clothes and headed home for Glasgow – it was only when we arrived home that the sun decided to show its face…

Everything else seemed to be cruising just fine. Kas has commenced maternity leave now and is trying to get in a few weeks of rest before we endure the sleepless nights that everyone insists on telling me about. Actually, that’s pretty much all I’ve heard about – getting through the babies first 6 weeks of life. It does sound pretty tough I’ll have to admit but I really can’t wait now. Feels like Kas has been pregnant for years! I’ve also heard about this ‘nesting’ thing that women go through – I’m sure Kas has been like that since I met her (5 years ago on the due date incidentally enough).

Gav’s wife Natalie also organised the Royal Bank of Scotland’s Ball that was held on the weekend – I was so stoked to hear that she was doing it all for the Anthony Nolan Trust. Unfortunately we couldn’t make as Kaswasn’t too keen on bopping the night away with big pregnant belly. From what I hear, the Ball went extremely well and they even managed to raise over £5,500 for the charity. Unreal!! The official Anthony Nolan Trust Scottish Daisy Ball in Glasgow is almost on too – we attended the Ball last year and it was so good! This year my work, Pernod Ricard, are backing to the Drinks reception and chipping in some booze for the event. It’s great to see so many people backing the enormously worthy charity!

So I’ll be back to see my Consultant at the Beatson Oncology Centre again next Tuesday – this is the 3 month PCR test since commencing my new drug Dasatinib. The big one (I know I keep saying they’re big!). This one really needs to be under the 1% mark! Fingers crossed anyway….

*Sad news today in the UK is that Jane Tomlinson has died. She’s the woman who was diagnosed with Breast Cancer seven years and since then, raised £1.75 million for Cancer Research including Marathons, Iron Man Triathlon UK and even the huge 4,200 mile ‘Cycle Across America’ campaign…